Patient Perspective: The Forgotten and the Pandemic of 2020

April 20, 2020

Wenora Y. Johnson is a three-time cancer survivor; volunteer research and patient advocate with Fight Colorectal Cancer, caregiver/provider, and US Navy veteran.

As the COVID-19 pandemic races around the globe, it is upending life and disrupting routines for all of us. For more than a few, it has taken away loved ones and livelihoods, presenting those of us who thought we were “normal” with a new normal.

But what about those who suffer from mental illness? For them, the new normal is magnified and much more frightening. Even during the best of times, individuals with mental illness are either forgotten or, perhaps worse, suffer the indignity of being thrown in jail, or placed into nursing homes or mental facilities because of their inability to cope with life as well as the rest of us do.

According to the Substance Abuse and Mental Health Services Administration, more than 3% of the 12.7 million residents of Illinois live with serious mental health conditions such as schizophrenia, bipolar disorder, and major depression.

This is a sobering statistic that hits me particularly hard. As the child of a mother who suffered from schizophrenia and bipolar disorder, I was always fearful of the potential “episode” my mother might have. As I grew into adulthood, my fear turned to constant worry about my mother’s coping skills, as she was frequently taken advantage of because of her mental disorder. After my mother passed away from her illness in 1991, I learned that two of my younger brothers also suffered from mental disorders. Their disease plagued them for much of their lives: it drove them to homelessness or forced them to rely on shelter from assisted-living facilities.

There are many stigmas attached to people of color with mental illness. African Americans are less likely to seek treatment for their disease and, thus, suffer in silence, left to feel lonely and forgotten. In Illinois, an already largely broken system is suffering a double whammy due to the pandemic. COVID-19 is handing down a death sentence to many African Americans in the state who suffer from mental illness. They don’t have family or the resources to seek help and to stay healthy. COVID-19 is shining a bright, harsh light on the healthcare disparities in the black community that we know have long existed. It saddens me to know that my brothers could fall victim to this virus just because of their skin color. 

People of color are often told to be strong during life’s crises. During this pandemic not only do I have to be strong for myself, I also have to be strong for my younger mentally ill brother who also suffers from stage 4 colon cancer. He resides in an assisted-living facility and listens to the news daily – it scares the heck out of him! During our weekly calls, he shares with me his fears about illness and his feelings of being forgotten. He no longer worries about cancer killing him; now he fears that COVID-19 will end his life—just because he is a person of color, a Medicaid recipient, and an individual with inadequate healthcare insurance. As his big sister, I continue to call and reassure him that I am there for him, and that I will visit more often once social distancing guidance is softened. However, I’m disheartened because the disparity is so great—I wish I could do more for my brother and others who suffer from mental illness, making sure they are not forgotten. 

COVID-19 is teaching us all that we must knock down the brick wall that healthcare disparities represent for people of color. We must all take our swings at the wall until it topples, and all have equal access to care.  Our next generation is counting on it, and I’ll be doing my part—one brick at a time—to make sure that no one is forgotten.


About the Author

Wenora Y. Johnson is a three-time cancer survivor; volunteer research and patient advocate with Fight Colorectal Cancer, caregiver/provider, and US Navy veteran.  

Wenora, who has been diagnosed with Lynch Syndrome, also advocates for genetic testing and awareness.  She serves on various panels and review boards to provide extensive feedback on her role as a patient and research advocate with several organizations, including the College of American Pathologists.

Wenora also serves as a:

  • clinical trials curator for Fight CRC;
  • volunteer with FORCE (Facing Our Risk of Cancer Empowered);
  • consumer reviewer for the Department of Defense’s peer reviewed cancer research program;
  • cancer policy and advocacy team member for the National Coalition for Cancer Survivorship;
  • technical panel expert  to review Medicare/Medicaid guidelines;
  • participant with the American Association of Cancer Research Scientist-Survivor program; and
  • member of the National Quality Forum’s Cancer Standing Committee.

Additionally, Wenora is an ambassador and clinical trials panel member for the Patient-Centered Outcomes Research Institute, and has presented a poster on financial toxicities and disparities among minority patients. She contributes to patient advocate blogs and has participated as a guest speaker for the Powerful Patient podcast.

Wenora works in administration in the greater Chicago area. She enjoys riding her motorcycle, reading, and traveling with her family.

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